Wednesday, March 9, 2011

"The Label"

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Noah received his official cerebral palsy diagnosis this week: quadriplegia.

I know it's just a label. I'm sad that Noah will carry any type of label no matter what the verdict would have been, but at the same time I think I've done well not being crushed by the type of cerebral palsy. I've had two years to know that eventually a official label would follow. I admit I had hoped it would be diplegia or even hemiplegia. Somehow I had convinced myself that Noah's chances at sitting, crawling, walking and talking would be greater with either of those two. But it's just a title, a name, a word. It shouldn't define Noah's chances. I just have to keep reminding myself of that. That this does not mean that Noah's reached the end of all he might ever be able to do.

Noah had occupational therapy today. I was a bit disappointed that we were supposed to look into a stander today, although the equipment specialist did not show even though we had this date calendared for at least a month. No status on his gait trainer, no status on the cuddlebug that I was assured would take two weeks or less for us to see... I'm a bit disappointed that I feel like the ball is getting dropped once again. Which means more phone calls to make to see if I can get it all coordinated on Noah's behalf. Noah did well at therapy today. He still very much likes his swings and of course I have to take his portable TV along for a distraction. It's almost like his security blanket. It helps him block out other things he can't handle. He only gagged once at therapy today when he was touching the rope to the swing.

We also broke down and purchased Noah a weighted blanket. It arrived today. It's a rather small blanket for being $80, but they are all custom made for each child, and Chris and I are praying that it agrees with Noah and helps with sleeping hours. There are so many other things we need to purchase for Noah, this long list is growing and none of it insurance will go near. He uses this special life jacket with a hood at pool therapy, that we need to order, along with a nemo floaty (which I happened to spot at Target but didn't price). I know the life jacket will be a special order item. I'm trying to get Noah to drink from a sippee cup, but we haven't found one yet that is agreeing with him, and he doesn't want to drink sitting up, he still prefers to be laying down with a regular bottle. He also did really well with handicapped paintbrushes and things in sensory class, things that I don't have at the house to practice with. Things that seem small but that add up to hundreds very quickly.

We looked into litegait training, and our out-of-home therapy center no longer carries it, and families are renting them in home. However that is not an option for us. We cannot afford the $350 monthly, the $250 shipping and the $200 deposit. Not to mention we don't have a therapy treadmill to accompany it. Even if I could find a way to get the money, it sounds like a type of therapy that would be best supervised with a professional. So that one will be going on the back burner.

Noah has also given me the potty lip lately, a prelude before the cry. Which is new. Oddly many have asked me this week if I think Noah is cognitively on target for age two. I don't know. He has no words, no way to play age appropriately. I'd like to think he's just locked in physically and understands it all, but I don't know. I know that with quadriplegia they say there is a higher likelihood of mental impairments that also accompany the physical. I'm just trying not to think about it much. I don't want to overwhelm myself with emotions or thoughts of things that I have no control over. I just have to turn it over to God for now. The worry is exhausting and can even be paralyzing if you let be.

Chris built Noah's garden last weekend. It is exactly how I pictured it to be. Now I am searching to find some OMRI Certified Organic Dirt to put in it, so I can start his little seedlings. And hopefully I can make a little sign to hang from him garden titled Noah's Miracle Garden.

I've been so busy with Noah's appointments that I totally forgot that I needed to think about giving up something for lent. I received all these emails (late) as my computer has been down for sometime, with declarations of intentions for lent. I remember the days when I would give up buying a pair of new shoes... the days when things were beyond easy. I received an email from a friend who also has cerebral palsy declaring they had already given up everything; the ability to self-feed, dress, bathe or care for themselves, asking what more could God expect them to give up? I understand that feeling.. when you say how much more. As I grow older, and travel this special needs journey with Noah I see things differently than I ever did before. For me it's not about giving up chocolate, or my favorite latte, or quitting sweets or not eating white bread... to me it's a time to think about Heart, Soul, Strength and Mind. It's a time for reflection. To spend more time thinking about where I am with God emotionally, to think about spending ten minutes more a day in prayer, finding the strength and courage to persevere, closeting the tears and the pain and finding more faith, remembering to be a person that comforts others in times of great need. Giving up one desire for lent isn't going to bring me any closer to God... but hopefully a collection of other things will. No matter what God is always there, no matter how much I worry, stress, cry or fret over Noah he holds my hand through my day. I feel this silent encouragement, I am trying to listen for I need all the wisdom I can gather.

A Lenten Reflection
Give up complaining——focus on gratitude.
Give up pessimism——become an optimist.
Give up harsh judgments——think kindly thoughts.
Give up worry——trust Divine Providence.
Give up discouragement——be full of hope.
Give up bitterness——turn to forgiveness.
Give up hatred——return good for evil.
Give up negativism——be positive.
Give up anger——be more patient.
Give up pettiness——become mature.
Give up gloom——enjoy the beauty that is all around you.
Give up jealousy——pray for trust.
Give up gossiping——control your tongue.
Give up sin——turn to virtue.
Give up giving up——hang in there!


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.